Tuesday, September 29, 2015

NORD Press Release on approval of Ensuring Access to Clinical Trials

The Kennedy's Disease Association (KDA), as well as hundreds of other organizations, supported the passage of S. 139. Many of us living with Kennedy's Disease, as well as other Rare Disorders, also contacted their Senators and Representatives asking for their support.

NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act
Washington, D.C.—September 29, 2015—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on yesterday’s approval of the Ensuring Access to Clinical Trials Act (S. 139) in the United States House of Representatives.
The House of Representatives echoed the U.S. Senate and showed its commitment to 1 in 10 Americans and their families by passing the Ensuring Access to Clinical Trials Act (S.139).  By passing S. 139, the House voted to remove income-related barriers to participation in clinical trials and toward developing much-needed treatments for the 7,000 known rare diseases, only a few hundred of which currently have FDA-approved treatments.
Today, 30 million people and their families have added hope that their tremendous unmet medical needs are one step closer to being addressed. Studying one rare disease can often lead to understanding of other rare diseases, as well as understanding of more common diseases.
As the Ensuring Access to Clinical Trials Act moves to the President’s desk, we close in on eliminating the challenges of rare diseases and to stopping them from altering and ending the lives of too many Americans much too soon.  NORD is proud to have supported this bill and to have advocated for its passage with the Cystic Fibrosis Foundation, Muscular Dystrophy Association, and many others in the rare disease community.
Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)

Read more about the Ensuring Access to Clinical Trials Act here.
About the National Organization for Rare Disorders (NORD)®
Established in 1983, the National Organization for Rare Disorders (NORD)® is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S.  NORD is committed to the identification, treatment and cure of all 7,000 rare diseases that affect 30 million Americans, or one in every 10 people.  NORD provides programs of advocacy, education, research and patient and family services to improve the lives of all people living with rare diseases. NORD represents more than 230 disease-specific member organizations and collaborates with many other organizations in specific causes of importance to the rare disease patient community. Join NORD at www.rarediseases.org and on Twitter at @RareDiseases.

The MDA also made an announcement today regarding the passage of this act. You can read the announcement at this link:  http://cqrcengage.com/mda/advocacy/issues/eact

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